In Loving Memory of Robert Davis

Robert Terry Davis, 68, died at home in Conroe, Texas, surrounded by his loving family after a courageous battle with leukemia.

Robert lived most of his adult life in Jackson, Mississippi, with his wife, Janine, and two children, James and Sarah. He was the long time business manager of the Jackson Water Department. Upon retirement he worked for many years as an independent computer consultant. He was a faithful member of Briarwood Presbyterian Church where he served as an ordained elder, deacon, Sunday school teacher, youth leader, and chairman of various committees. He was also a life member of the Optimist Club. After moving to Texas, he was a member of The Woodlands Community Presbyterian Church.

Robert was a native of Meridian, Mississippi, and a graduate of Meridian High School, Meridian Junior College and Mississippi State University. He was a veteran of the Vietnam War, serving as a member of the U.S. Army. 

Robert is survived by his wife of 45 years, Janine Johnson Davis; their children, James Davis (Taylor) of Carrollton, Georgia, and Sarah Paul (Ryan) of Montgomery, Texas; and grandchildren, Helmi Davis, Modi Davis, Cason Paul and Claire Paul. He is also survived by his sister, Rachel Davis Fowlkes, of Abingdon, Virginia; and his brother, Tommy Davis, of Inman, South Carolina; along with several nieces, nephews, cousins and extended family members. He was preceded in death by his parents, John T. and Elizabeth Watts Davis, of Meridian, Mississippi.

A memorial celebration of his life will be held on Saturday, June 17, at 11:00 a.m. at Briarwood Presbyterian Church in Jackson, Mississippi. In lieu of flowers, memorials may be sent to: Leukemia and Lymphoma Society – Light the Night "Team Ardie" (http://pages.lightthenight.org/txg/montcty17/TeamArdie); MD Anderson Cancer Center, Houston, Texas; Briarwood Presbyterian Church, Jackson, Mississippi; or The Woodlands Community Presbyterian Church, The Woodlands, Texas.

http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Robert-Davis&lc=4922&pid=185793796&mid=7444787&cid=em.legacy.dm.4922.7444787&eid=sp_sciobitposted

MDA "Hilton"

Last night we checked out of the MD Anderson Hospital (Hilton) after a five day and five night stay. Our luxurious suite was complete with a reclining, adjustable bed and a Murphy Bed beneath our 11th floor window view of NRG Stadium, home of Super Bowl LI. Included was a modest bathroom/shower combination. The water pressure was below standard and it took approximately 5 minutes for the hot water to get warm. The room temperature remained at a balmy 77 degrees regardless of lower settings that did not do any good. They did get that fixed the morning we were set to check out. We finally got checked out at 7:00pm. Typical MDA times.

The reason for our dream Super Bowl weekend was my getting very lethargic and feverish late Friday afternoon. It hit me so quickly that we feared I had the flu. Once we got to the Emergency Center about 5:30pm I was beat. Within an hour my temperature spiked to 102+. Testing ruled out flu but it would take days to grow blood cultures for a definitive diagnosis. I was finally moved to our "suite" about 1:00am Saturday.

Of the three previous hospital stays at MDA over the past three years this was the smallest room we have had. Before, Janine would spend the nights in a hotel or apartment. This time she camped out on the Murphy bed because there was no room at the inn. She was able to see the NRG roof open at halftime and did not see Lady GaGa's fake leap. Ha! She did see the smoke rise from the fireworks. I watched the fake versions on TV and was impressed. The game was pretty cool, too. We estimate the cost of our Super Bowl far exceeded that of anyone who was in attendance.

I was given three new antibiotics mostly via IV with one  or two by capsule or tablet. Also, I received three units of red blood cells due to dropping hemoglobin levels. I also started daily nuepogen shots to boost my seriously deficient white cells. By the day before discharge no specific diagnosis was determined so they called it neutropenic fever. (The fever broke after 24 hours and never went above normal the next four days.) A CT scan of my chest done the day before discharge revealed pneumonia in my right lower lobe. Why it took four days to do that is beyond me. The last four times in the MDA Hilton revealed pneumonia within one or two days. Needless to say I was happy to get out of there before they tried to treat it for another two weeks in hospital. Now I will get treatment IV antibiotics in clinic for 7 to 10 consecutive days. Most of these will be done in The Woodlands MDA clinic. Friday, Saturday and Sunday will be in the main campus in The Texas Medical Center.

Friday morning I will also see Dr. Kadia for my monthly appointment that was delayed while I was hospitalized.

Memory, Counting, Anniversery

It has been two months since I posted an update so this is a challenge for my waning memory. Yesterday was the completion of five consecutive days of chemotherapy.  Today is "66". That is day 6 of cycle 6. My chemo cycles consist of 28 or 35 days depending on my doctor's evaluation of my blood test counts and my overall response to the treatment. The first four cycles of the current protocol were different than cycle 5 and 6. The difference in types and frequency of the treatments changed last month giving my body a break and change from getting too much of the same chemo drug each month. All in all I have tolerated these cycles fairly well. Twice a week blood is drawn for constant monitoring and testing. My blood counts, while up and down from week to week, have trended steady overall. I think I've been transfused with with red cells and platelets twice each in the past two months with 2 units each time. White cells do not get transfused. However, when necessary, injections of white cell booster drugs have given me temporary improvement. I'm scheduled for another one of these shots next week as my white cells usually drop to very dangerous levels around day 10 to 12.

About eight days ago I had another bone marrow aspiration procedure. That was 21 times since January 2014, but who's counting?  The analysis and report of bone marrow tests is very complex and complicated making it difficult for the average patient/layperson to understand. However, my understanding is that my bone marrow has been positively affected by these latest six cycles of chemotherapy. My medical team continues to be pleased with my progress. I accept and appreciate their optimism realizing none of this is curative. Rather this treatment goal is for improved quality of life. Maintenance or Salvage chemotherapy is what they often call this plan.

Three years ago on this same date I was given a preliminary diagnosis of a blood disease. The next day I had my first bone marrow aspiration/biopsy confirming my leukemia diagnosis as MDS. So this marks my 3rd anniversary of our fight. Surviving this long is uncommon given the bleak classification of my disease. MD Anderson Cancer Centers continue to amaze!

The power of prayer is humbling yet very welcome. All who have participated in my journey are recipients of God's grace and power.

Happy Thanksgiving!

With four cycles of double chemo completed we reflect on this "New Normal" with "Thanksgiving". I'm grateful we can live with my cancer while fighting, struggling and surviving. Cycles 3 and 4 were not without challenges. My important blood counts did not respond with much improvement but were steady and pleasing to my medical team. Today is the 17th day after the start of Cycle Four and hopefully the bottom of my downward trending counts. Transfusions of blood and platelets were done in the last few days giving me much needed strength and blood flow stability. Today, I had another in a frequent series of blood tests and lab analysis, followed by a review with my APN. The counts are still not high enough for us to be in large gatherings of friends and family so a traditional Thanksgiving gathering is not a smart idea. I miss these times the most of all the downs in our journey. Janine is a great cook however, so we will enjoy our meal together.

Below is a prayer I have used and offered at times of Mississippi family Thanksgiving dinners. It became a traditional heartfelt offering of gratitude to God for our many blessings. More than ever it still remains our prayer lifted up to our heavenly father in gratitude. If you were ever with us on such occasions please enjoy your Thanksgiving tomorrow knowing we cherished those sweet times with you all.

Thanksgiving Prayer

Robert Davis

November 22, 2001

We gather today around our Thanksgiving table praising you oh God with joy.

We’re thankful for this great land, things mighty and small, for seen and unseen splendor.

Thank you God for human life; for talking and moving and thinking together; for hopes and hardships shared with each other; for work and the strength to do our tasks.

We’re grateful for laughter and encouragement when we are happy or sad.

Thank you great God for our marriages; for the mystery and joy of flesh made one; for mutual forgiveness and burdens shared and for secrets kept in love.

Thank you loving Father for our families and for living together and eating together from your great bounty.

Thank you for letting us grow up and grow old; for wisdom deepened by experience; for leisure; and for time made precious by its passing.

Thank you for our children and grandchildren; for their energy and curiosity; their loving spirit and their joyful pursuit of happiness.

We offer now this prayer of Thanksgiving for whom all blessings flow.  For you oh God who gave us this eternal live through your son Jesus Christ our savior. 

Amen.

Birthdays and Anniversaries

Today should be the one year anniversary of our new house move-in day. "New House" is a strange term because we had never owned a new house, before.  So this is a remarkable achievement for us. We were not considering purchasing a new house in our Texas destination but after looking at many resales on the market in our target areas, the new house option became a reality. We have enjoyed the look, feel and smell of our house.We are where we are because of my health. This was necessary in our hearts and minds. We also love being close to The Paul's (Sarah, Ryan, Cason & Claire). If not for them, I doubt we would have been able to see clearly what they saw coming several years ago; Not me getting sick, but our relocating to be closer to them. Getting sick just expedited the decision. Yesterday, I learned my bone marrow aspiration test revealed a "blast" count of only 1%. This means bone marrow remission, good news. Monday, I begin the 3rd cycle of the chemotherapy treatments, three consecutive days of IV and five days of injections, the same as was done last cycle.  This is sometimes known as rescue or maintenance chemo. It is not intended as a cure or a long term solution, rather maintaining my survival for longer, more enjoyable times to come. I will see Dr. "K" on Wednesday afternoon for more evaluation and update on future plans.

So Janine and I get to celebrate her birthday again at MD Anderson with her holding onto me while we share my trials and her great strength. We will also share our 45th Wedding Anniversary on the 9th of October "...in sickness and in health....".

What's Next?

Yesterday we met with Dr. Kadia for my regular appointment. It had been three weeks since my last meeting with him, but well over a month since Janine was in the doctor's office because she was back in Meridian during the funeral and celebration of her mother's wonderful life. Our time with him and with Alexis, our favorite PA, was mostly about future plans. We were wanting a better understanding from the "team" about the plan for my treatment in the coming weeks and months, the short term goals. Specifically, we hoped to find out if the current chemo treatment could be sustained for many more cycles and/or if we were still preparing for a stem cell transplant In the near future. Always in our consideration is the stem cell transplant, the only known cure for my MDS condition. Success rates of 5O% or less and the very costly and difficult recovery process make this a hard decision. Right now there are no other good "miracle" drug trials available and nothing on the horizon that gives us hope other than maintenance through more chemo or taking the transplant plunge. 

Also we expressed our need for a "vacation". This chemo process and the frequent labs make getting away for anything longer than one day almost impossible. Dr. Kadia agreed we can suspend treatment in between cycles for about a week to ten days provided my counts respond favorably to this current cycle. Not that we plan to cruise the Caribbean or the Aegean Sea it would be nice to get away for a beach trip or early fall Carolina mountain retreat.

Last month Janine snapped this picture of me lying in bed while I was getting a blood transfusion. The multicolored blanket is the focal point of the picture. Our friend Susan Sumrall crocheted this beautiful gift for me and it has been my favorite companion for the past 30+ months. Everywhere we go it draws positive comments from friends and strangers alike who share in our medical journey. It is more than a traditional security blanket because I get quite cold when recieving treatment. The warmth and comfort of a blanket is a small convenience while the love and healing that comes from our connection to our church friends is symbolized by Susan's colorful offering. Thank you Susan, Briarwood, WCPC and the hundreds of friends, family and friends of family who are connected to us in prayer and loving encouragement.

Conventional Chemotherapy

Today, Thursday 9/8/16, is day 11 of the second cycle of chemo treatments. That is 11 days since the start of round two. That round took 5 and a half days so I am 5 and a half days post treatment. Confusing, but that is how they count the days from the start not the end. So far no pneumonia. My white cell counts took a dive to 0.4 yesterday but the hemoglobin (red cells) and platelets were good. It is common for white cell counts to go down during the first 15 to 21 days so I guess all is normal for now.

We travel back to MDA on Monday, Wednesday and Fridays each week for labs and reviews and with a doctor appointment on next Friday the 16th.  With good counts no transfusions are needed. These are not bad except very time consuming, 4 hours minimum, and less effective the more frequently they become necessary.

We must be very cautious with such low white counts, however. Infections are my worst enemy, now. If things progress well for about two weeks we may see positive results. This is speculation on my part but always hopeful. But for now I have to avoid crowds, sick people, etc. Wearing a surgical mask is the norm when out and about even when uncomfortable for me and those who see me. A touch of feeling discriminated against, I suppose. This is the way it is as we do what has to be done to stay as healthy as possible.

Last year I was lulled into a false sense of security with my remission seemingly steady. Things changed quickly, however when the "miracle drug" stopped working. Then new mutations were identified in my bone marrow which no targeted therapies were available. Therefore, more traditional chemotherapy was needed to kill all cancer cells in my blood and bone marrow instead of trials and treatments which target specific mutations. The problem with this course of chemo is that side effects are more harmful, i.e. infections like ones that cause pneumonia. Also it seems this is more of a stop-gap approach with short term goals. Long-term is to cure my disease that only happens with a stem cell transplant, a risky procedure for me. So we work to get me healthy enough for the stem cell transplant and decide if this is best for me when and if we ever get healthy enough to make that a good possibility.

In the mean time I fight this MDS (leukemia) with whatever is available and reasonable. Prayer still works so all who see this and who have faith in prayer please continue to keep us in your prayers.

Roller Coaster Ride

This has been an up and down and up past 30 days. About a week after my first cycle of chemo treatments I was hospitalized for 13 days with a bad fungal pneumonia. By the time I was discharged we stayed a couple more days in the Rotary House Hotel, attached to MDA for daily monitoring and labs. I had a bone marrow aspiration on the 19th of August followed by our appointment with Dr. Kadia on Friday August 21st. The preliminary results of the bone marrow test revealed my blast count had dropped from 13% to 3% which was excellent news (3% is within the normal range). Also, my major blood counts started going up to better levels again.

By day 21 past the start of that first round of chemo my counts started improving and by day 28 my bone marrow was once again producing better blood cells. Today, day 35, my platelets were up to the normal range and my white and red cells were higher than anytime in the past 4 or 5 months.  Also today I started the second cycle of chemo treatments. This time the volume of chemo was reduced to 3 days IV and 5 days of concurrent injections. Since my counts are so much better starting this round of treatment we hope the side effects will be more tolerable and that pneumonia will not happen again.

This cycle will last a total of 5 consecutive days meaning Monday through Wednesday the IV chemo will be done out patient at MDA while the Thursday and Friday injections will not require a trip back to MDA except on Friday when we go back for more labs. So 4 of 5 days we will travel back and forth from home to MDA. Beyond this second cycle we still do not know what to expect. It is hoped I will continue and go back into full remission. My Doctor even said I am back in partial remission, now since one of my blood counts, platlets, has returned to normal, my bone marrow is normal and that the major IDH2 mutation was not present. Also the rapidly improving white and red cell counts leaves him very optimistic about my prognosis looking forward.

The roller coaster ride continues but the view is far better from on top than on the bottom.

Jean's Dining Room Table

Her Dining Room Table became a symbol of who she was. For most of my life I was honored to know Dorothy "Jean" Johnson. Much of our time together was spent enjoying holiday meals sitting around that old table. Jean could put out a spread and hundreds of us throughout the years sampled her many great dishes, my all time favorite was her famous "Golden Baked Potatoes". But more than the great meals we enjoyed around her dining room table at 3819 Grandview Ave. in Meridian, MS I enjoyed the family gatherings and being around "Grammy" Jean even more.

When Janine and I started dating back in 1964 Jean was always there to greet me at the door. Even when Janine and I were on the outs, as we often were back in the early days of our romance, Jean always believed in me when even I doubted myself. That is who she was. She chose me far before Janine ever agreed to be my wife. Not that I was her favorite like so many said throughout the years. Jean only had two favorites that I knew of, the one being her beloved husband, Dugan and the other her lord and savior Jesus Christ. Everyone else that she knew or was a part of her life was her favorite. Every daughter, every son-in-law, every grandchild or great-grand child were her favorites. That is who she was. Christlike in every since of the word is who Jean Johnson was.

That old dining room table of Jean's has been a fixture in our house for about eight years. We even moved it to our new house in Texas last year. It is massive when all ten leaves are installed much like it was in Meridian for so many holidays. We devoured more good food on that table than I could ever describe. My favorite story of how sweet Jean was to me was indirectly related to that table but was of a Thanksgiving dinner back in about 1972, I believe. Janine and I had just celebrated our first wedding anniversary the prior month and we were in Meridian for Thanksgiving holidays. Dugan, the man of the house, usually carved the turkey but he was hunting that year so the task fell to me. Jean carefully sharpened the big carving knife and left me to the chore, unsupervised. After about 15 minutes she returned to me as I was struggling through that poor old bird. She silently reached down and turned the turkey over to the correct right side up position and it was smooth sailing then. She never laughed at me or mocked me for not knowing what I was doing. Needless to say I was the butt of everyone's joke that year except for Jean. I also became known as the best up side down turkey carver in the world that year and became the master carver who always carved the turkey every year thereafter.

If that old dining room table could talk it would tell of how Jean Johnson was the crown jewel of the Johnson family. She was one who never gossiped when we all did, who never, ever uttered a disparaging word about anyone when we all did. She was as pure as snow and as Christlike as I ever knew. If there was no Bible to read and you wanted to know about Jesus just follow Jean for a few years and you would be a true believer. That is who she was.

No, I was not her favorite but she was my favorite. Thanks to Jean I am a better person and anyone who ever knew her is a better person, too.

Change of Direction

The last six plus weeks have been frustrating physically and emotionally. My latest Bone Marrow Aspiration test showed the major indicator, i.e. the "Blast" count had jumped up to 13% from 5% when it was tested only five weeks before. This along with quite a bit of molecular analysis and cell evaluation confirmed remission was over and I was quickly heading in the wrong direction again. Frequent blood tests throughout this period also revealed downward trending counts to worsening levels. As a result I am getting more and more fatigued, weak and frequently lethargic and am on infection and bruise/bleeding alert and am having other symptoms of this progressive disease, MDS.

Throughout this period my doctor tried several dosage level changes of the AG-221 that had been so successful for such a surprising period. We started out taking 100mg, down to 50mg, to suspension. Then back to 100mg then up to 200mg and finally suspension, again. All of these changes were done over a two month period. Nothing helped. My team concluded through extensive testing that two new mutations in addition to the IDH2 mutation that was being targeted by AG-221 were now present rendering my condition more difficult to successfully treat. 

Therefore, our team concluded I need to be put back on a more traditional IV administered chemotherapy simultaneously with a different series of chemo injections (shots). When this was revealed last Wednesday during our most recent doctor visit/appointment I was required to start the chemo treatments that same day/evening. Pretty much disappointing is an understatement as to how we felt about doing this again after almost two years. So we were required to get a hotel room for 3 nights while my IV treatments were done on an outpatient basis because the medical team wanted us close by the MDA hospital, clinics and ER in case of problems or complications. After four daily infusions lasting over an hour each we were allowed to go back to our Conroe home on Saturday. To make things even worse, Janine, was required to administer the shots in my stomach every 12 hours for 7 days. She does not like doing this at all but does it well with minimal pain to me. By tomorrow, Tuesday, she will finish this first 7 day cycle of sticking it to me. So to recap my new chemo treatment is simultaneous IV and injections. The good news is I am on a "low dosage" chemo which should minimize negative side effects.

Today, Monday, August 1 we traveled back to MDA for the first blood test after the IV part of the treatment was completed. As expected, my major counts got worse. It's the old adage that things get worse before they can get better. On Wednesday we repeat the blood testing right after the end of the injections. It is expected blood transfusions will follow making that a very long day. Then we see my doctor and team on Friday after more blood testing. An assessment will be done and detirmination made if and when more chemo treatments will be necessary.

Deja Vu

On Friday June 3rd it seemed like I had been here before.  It was sort of erie because here we were almost two years after the fact and meetings with my medical team showed virtually the same outcome as the first ones we had before. After having my “research visit” tests we saw Dr Kadia.  I along with Janine and Sarah just like the first times we met him in July 2014, had very frank discussions about my condition and prognosis. Following our meeting with Dr. K we had an evaluation and meeting with Dr. Jones and his Stem Cell transplant team who we had also first seen in July 2014. The similarity of these two meetings was disappointingly familiar. Disappointment because for so long my treatment had been so successful. Being in remission for over 20 months gave us a since of hope that the "Miracle Drug" I had been taking would be a permanent solution to keeping my condition in check in the future. Now that doesn't seem to be my fate. Rather, much of my condition has reverted back to the levels it had been nearly two years ago.

We know my condition is getting more difficult to treat with conventional as well as nonconventional therapies. The transplant route is becoming more and more necessary for my long term survival. So for now my doctors are trying to get me prepared for this procedure by getting me healthy enough to withstand this very hard road to navigate.

During May my dosage level of the AG-221 was reduced by one half down to a 50mg tablet per day to see if my downward trending blood counts would be improved. After a little over a week of no improvement I was instructed to suspend taking the drug completely. More blood tests and another bone marrow biopsy showed no marked improvement. However, the IDH2 mutation that had been driving my illness and that was not showing during my lengthy period of remission was again evident in my new tests. Thus my doctors now believe the AG-221 medication needed to be restarted at the 100mg level in hopes it can again suppress the IDH2 mutation. This is what I did about a week ago. We go back to MDA for more testing and evaluation on Friday June 17. Preliminary blood testing on June 10th showed negligible change.

We have much to be thankful for. Such a long period of remission was never expected but it  enabled us to get moved and to better prepare for whatever comes next. Everything is pointing to the stem cell (bone marrow) transplant as that next step.  I have very mixed feelings about doing this. On the one hand it is the only possible cure for my condition but the success rates vary from as low as 30% to about 60% depending on how well you are when the procedure is done.  Much younger and healthier people have a higher success rate but ones like me are more in the 50 to 60% range at best.  The other thing that gives me cause for concern is the extreme expense involved both financially and physically.  

If we do this I will be hospitalized for a minimum of 30 days followed by another 70 days of outpatient convalescence in an apartment or hotel within a short distance of MDA, not our home in Conroe.  We know first hand how difficult such extended stays away from home, tied to the Medical Center, can be.  Now we face an even longer period.  The physical expense is far more concerning to me and our family.  We will be completely uprooted once again.  I know Janine will be ok with this but I wonder is it fair for her to keep sacrificing this way.  Also, others in the family will be affected to a lessor but important way.  Sarah and her family, because of our close proximity, will be making many more trips to the Medical Center district to check on us, visit and to attend doctor appointments. Also they will be asked to check on things at our house while we are away. I know she will do this without hesitation but I don’t want to put more of a burden on her and her family.

I’m not sure I can survive the whole process and ever get back to a healthy quality of life. Not that I'm giving up but our options are more difficult to consider. So we keep plugging along, trying whatever seems best and following each new step forward. Sorta like we started over 2 years ago. Deja Vu.

Game On Mylo!

Today, my head is spinning with the bad news from our Wednesday visit with Dr. Kadia and our  medical team at MD Anderson who pretty much let us know my illness is no longer in remission. The experimental drug I had been taking for almost 20 months has either stopped working or my disease is getting around it and finding its way back. In any event, Dr. Kadia told me to stop taking this "Miracle Drug" that has been my life line for so long. He wants to get my system clear of any chemotherapy so the next "something" can be done.

He didn't call it "something", they never use such terms. But that is how I heard him. Another approach or therapy is needed. The one thing I heard clearly was another consideration of my having a bone marrow (stem cell) transplant. He has consulted with Dr. Jones, our MDA Stem Cell Transplant Doctor, who had evaluated me almost two years ago. Back then I barely qualified to have that procedure once a suitable donor match was found.  Because of delays we were fortunate to get into the current drug experiment that bought me a good 18 to 20 months of remission. However, the transplant route may be now necessary if I am to have any reasonable quality of life in the immediate future. We will meet with that team right after my next appointment with Dr. Kadia on Friday, June 3. If I qualify again and my health is able to handle the very difficult preparation, procedure and recovery we may be going that route. I think the donor match from two years ago will need to be verified again or a new donor will be sought. We'll see.

So for now a new milestone has been reached even though it is not where we want to be. I had my first blood (Red Cells) transfusion on Wednesday since October 9th of 2014, an almost unheard of achievement. Yet bittersweet since being independent of that need was a badge of honor for me. However, my anemia and fatigue was getting me down so I needed that pick-me-up. Also, transfusions as unpleasant as these are, buy me time.

The way I understand it my disease, that was never cured, still remained trying to find a way around the “miracle drug” and it is now doing its "nasty" again in my system.  Keith Tonkel, one of our favorite partners in cancer and a great minister and blogger, calls his cancer by a cute name "lil bugger" so I too will call it, her or him by this name, "Mylo". He is our foe and his cunningness is without compare. He is the devil of my blood and he will not prevail. My disease is not some nameless ailment. We know him, know his dirty tricks and deviously evil attempts to make me sick. Game on, Mylo!

We got a first bloom yesterday on a mystery plant at our new house. We wondered what this plant was before it bloomed. Just thought it an ugly grassy, plant. Now I think it may be a Day Lilly. Anyway, it was a pleasant, beautiful surprise. New flowering growth. An omen of good things to come, hopefully.

The Unknown

My last bone marrow aspiration showed elevated blast count from 2% to 5% meaning the first significant increase in over a year. Normal range is from 0 to 5% so I am happy to remain in the normal range but concerned there may be an upward trend pushing me back into the difficulties of the disease. Yesterday's blood test results were mixed with continued downward trending white cells, stable platelets and adequate but low red cells. 

Our medical team is also concerned but optimistic that what is happening is a condition my doctor called Gilbert's syndrome or UGT1A1 polymorphism. I am one of the study patients who may be having prolonged exposure to the experimental drug, and may be having some myelosuppression. Since my counts are adequate, they will keep about the same dose level for now and continue to monitor. If I have continued reduced blood counts he may talk with the drug company about reducing the dose I am taking.

Dalewood Memories

I have been feeling a bit nostalgic lately so here is a memory to share. It was 20 years ago that Daddy sold the Dalewood property.  Our last time to spend a "Cousin's Birthday Party" at Dalewood was in August 1995. Sometimes memories of times and places from long ago give me a warm since of peace and joy. If you ever spent time at Dalewood with our family over the years you may enjoy this look back.

My White cell count has continued to trend downward to the point of concern. Today we go back to MD Anderson in The Woodlands Clinic for another blood test. It was only one week since my last blood draw there. When all was going well my blood test were scheduled every two weeks. So far no new treatment changes has been suggested nor have I had a new blood transfusion yet. Next week I go to the main Houston, MD Anderson for my monthly appointments with my care team.  I will have my bi-monthly bone marrow aspiration in addition to blood and other testing, so we should know more about what is going on after that visit. For now, we are just hopeful all is ok and that my White Cells are going to get better.

The recovery from my fractured rib is slowly getting better. This has been a tough time with much pain and discomfort.

Winter In Texas

Discovering new things in our surroundings is interesting, if not fun. We call it "being in Texas" but that is such an incorrect description. "Texas" is a huge state and we only occupy space in the Houston, area. This is not a geography lesson nor is it meant to suggest we are completely lost in our new home. What we discover every new day, however, is how much different things are for us in this place we call "Texas". Maybe living in the fourth largest metropolitan city area in America is the big thing compared to being small town, Mississippi country folk. Are we like fish out of water?

It's hard to believe how quickly time passes. My last post was in December just before Christmas 2015 and here it is Mid February 2016. My health has been crazy good and bad. The good is my MDS remains in remission and the "Miracle Drug" AG-221 experiment is still my lifeline. My monthly appointments with the "Team" at MD Anderson have been good. Today, I get to do my mid cycle lab testing at The Woodlands MD Anderson clinic on the campus of St. Lukes Hospital instead of having to travel down to the Texas Medical Center MDA in Houston. This is a welcome big deal for us because we avoid the heavy, dangerous travel to and from that area for at least one extra time a month. Even though Janine is now a "Pro" at driving down there every time we go, we welcome not making that trip as often, only once a month now.

The bad is that I have been nursing a very painful rib fracture for the past two weeks. I had a fall early one morning when I passed out in the toilet room (standing). This occurred about 30 hours after I had undergone a surgical procedure while recovering at home. Likely, dehydration caused my passing out since I had not eaten or had very much to drink prior to nor after the procedure. I broke the ninth rib on the right side. Healing is taking place naturally as there is nothing they do for these fractures but tell you to tough it out. So far it is much better and the pain is only terrible when I sneeze or move quickly  into a strained position. Sleeping at night in bed still is a challenge but is getting a little better.

It seems our closest "friends" here are our medical teams. I have established new relationships with the following practitioners: primary care physician internist, pulmonologist, breathing center therapy  "terrorist", cardiologists, colorectal surgeon, dentist, ophthalmologists and local oncology team. Additionally, Memorial Hermann Hospital and their emergency room and an emergency clinic have been visited by me for various reasons or problems. Janine's new doctors are also established now with an internist, dentist and ophthalmologist. Almost every day we have been at one of those medical places.

Photo Opportunity:  Every year we try (some years it doesn't happen) to get a family group photo made. This one below was taken a few days after Christmas when we all gathered in Carrollton, GA to celebrate with James and Taylor in their new home area. Trying to get all Ten of us together at the same time is getting more and more difficult as we get further scattered about. This was a welcome opportunity, in deed.

Advent 2015

We recently attended the second, third and fourth Sunday of Advent worship services at churches in our new Texas home. We miss our neighbors and friends from Jackson, especially ones from Briarwood Presbyterian Church. In corporate worship we enjoy the sharing of prayers, scriptures, music, communion and fellowship. No matter where you are and who you are sitting beside, Advent is a beautiful time both visually and in our spirit. It is about waiting, anticipation and above all patience. For truly a believer receives joy with His coming and is rewarded in time with waiting patiently for the One who we worship.

My health still consumes much of my existence. It never was that way prior to my turn of illness. Before I started getting so sick, rarely did I spend much time in medical clinics, hospitals or the like. I had no use for doctors! In fact, I avoided them and their profession as much as possible. I could write a book about how and why I did not like anything about healthcare but I will spare you my convoluted opinion on that subject for now. Needless to say, my opinion has mellowed somewhat. A cancer diagnosis will do that, especially when your care has been nothing short of miraculous.

So much has changed for us in such a short period of time. 2015 has been a remarkably good year in light of the pain and sorrow we felt for most of 2014. However, nothing compares to the love and peace we have and that surrounded us for the past two years.  I am still sick but have remained in remission for over a year. Thanks be to God!

We are settling into our new Texas home that gives us joy and peace.  Moving from Jackson has been one of the most difficult things we have ever experienced.  Yet, we had to make this move and are pleased at how well it has gone, so far.  We are happy with our new surroundings and know that being close to MD Anderson and to Sarah and her family is the best thing we could do at this point in our lives.

About six weeks ago I was hospitalized again for pneumonia.  This is the the third time in less than two years for me to experience this problem.  Like other times, I did not know I was sick with pneumonia. Janine rushed me to the emergency room about 5:00 am after I awoke unable to catch my breath. It  was quiet unsettling to me and especially to Janine. Three days later I was back at home loaded with more med's and a few new doctors. I have recovered well now, have a new pulmonary doctor that we like and needed and am enjoying better breathing.

My MDS remission has recently been challenged by slightly downward trending White blood cell counts. So far it has not gotten too low but I am on infection alert but able to travel and be around people provided I'm careful. I remain on the AG-221 experimental study/trial drug having completed 15 cycles. All has been good with the treatment and no serious side effects have occurred.

Today, December 22, 2015 we went to MD Anderson for my mid-cycle blood/lab tests and PA review. We got to see Alexis, "my girlfriend" as Janine affectionately calls her. She makes me and Janine feel good even when we don't. I share my annual Christmas Photos of us below. She is our pretty face of MD Anderson.

Merry Christmas to All!

"Storage Queen"

Janine's sister Dee has been one of our great Angels. She was also involved in all the packing and clearing out of the Jackson house. Dee is a "Storage Queen" having several storage lockers in her home town of Gulf Breeze, Florida. She helped us get organized and to physically do the heavy lifting and packing and loading and reloading and everything that goes with the process. She has been a huge relief to me. Dee has been the one who replaced me and picked up my load and carried it to where we are now.

She represents for us everything good about family. The above paragraph is real and true in every since of the word. However, it is a metaphor symbolic of the act of "bearing one's load". Words like that are indicative of Christian attributes since we believe Christ bears our burdens or loads in life if we will just call on him to do so.  

Dee was raised by one of the most Christian women I have ever known, her mother Jean Johnson. In over 50 years of knowing her I have never heard Jean utter a cross word or say anything bad about another person. Dee, Janine, Becky and Rosanne were raised right and I am the beneficiary of their goodness.

Dee has been a good sister to Janine throughout my sickness. Right after we returned to Jackson last year from long unexpected stays in Houston Janine needed to go back to work and catch up on a lot of missed task and duties. Dee traveled from Gulf Breeze, FL to Jackson and stayed with me during the day so Janine could go to work. My condition was so bad that I required someone to be with me 24/7 so Dee carried that load, too. She stayed with us for several weeks until Janine and I had to go back to Houston for longer stays. Then when we were finally able to get back home Dee found the time to come back to Jackson and help out again.

Dee you are the best! Thank you, thank you, thank you!

Production

What a wild time these past two months have been for us. My health has continued to improve with the leukemia still in complete remission. Blood cancers are marked by many transfusion moments. Not since October 6, 2014 for me, though. Amazing! I get to enjoy the needle every two weeks for my blood draws and these are far more tests than most people have but I give blood for testing, not take it to survive anymore.

It's the consumption vs production continuum. For way too long I was a consumer of other's blood production. Receiving many transfusions from unknown donors is humbling, yet necessary. For almost a year no donor blood has been used for me. My blood cells have been good. Last week my bone marrow exam was the best it has been since I was diagnosed in February 2014. If I heard her correctly, Alexis said my bone marrow was "normal" with no signs of leukemia. (I tend to not hear well or to hear more than was said so who knows?) I still think I'm doing pretty well on the cancer front. I am a producer again! Mind you, I can't donate blood to pay it back or to pay it forward but I am manufacturing my own healthy blood again.

On the house hunting/moving front we have been in a great zone. The Jackson house closing went off with no problems. Only a few minor repairs were required to be made so we went to closing on August 31st and became houseless, but had new funds in hand to better negotiate our financing of our new house in TX.

We hit the road and got to Houston the first week in September. After a long but rewarding Friday at M.D. Anderson we moved into a temporary location and started serious move preparation. Finally, we had found what we wanted after weeks of looking. My health is good but my stamina is not so I was a burden to all during the process. We were on our way back to Jackson on Saturday August 23, 2015   with no final selection made when we decided to turn around and go look at some newly constructed houses that we had previewed several weeks ago but didn't feel too sure we liked the locations. Now it was in a better state of completion that showed us the development was looking very appealing. Also, attracting us was the knowledge that many of the new builds were priced less than the resells on the market. With deadlines drawing near for us we also enjoyed the newness of everything and great price incentives from the builder in our target area. So we picked a new house that we liked, was affordable (mostly) and negotiated a deal we liked. On September 23rd we closed on the new house and started our final push to get permanently relocated.

Our final phase is to go back to Jackson this weekend and wrap up a few last "good bye" visits. Then on Monday we meet the moving crew at our storage facility to "supervise" the loading of their truck. Everyone who helped us clear out the Jackson house on August 28-30 did grueling work. James, Taylor, Sarah and Janine worked very long and hard on that Friday/Saturday emptying the house, loading a big truck and James' trailer, driving to the storage place a few blocks away, unloading the truck onto their large carts, navigating up and down the elevator numerous times and cramming as much as they could into our two storage units.

Like most tasks we were under a tight time frame so the last hour on Saturday was hectic trying to get everything to storage by 2:30pm, the time the facility would close and need their free loaner truck back. Somehow we made it but still had a lot of stuff left to get out of the house. This post is getting too long so for now I must close. Later I hope to share more about the final push. My love to all who helped us get through these difficult days.

Lasting Image

One of the lasting images of our kitchen will be me sitting at the kitchen table last Christmas season while Janine performed the weekly PICC line maintenance on me. Every week she would go through a rather lengthy procedure to change my dressing that covered and protected my arm and me from infection at the site where the catheter enters my arm. Every week for more weeks than I can count she did this.

She had to take a class and repeat the class to get certified in the procedure. "Nurse Janine" with this new credential stepped into a realm of new, unknown tasks with this effort. It started when I was hospitalized at MD Anderson back in July 2014 and began a clinical trial chemotherapy regimen. I received intravenous treatments twice a day and night along with several other drugs that were attached to me like a tree with branches and vines. Having a PICC line was sorta like a right of passage for leukemia patients. If you didn't have one you were not cool! The down side is that the dressing had to be changed on a weekly basis and my care giver, Janine was required to do this.

What started out in early August after my first discharge for her was one of the most dreaded difficult activities. In addition to removing the old dressing, cleaning the skin using several methods and swabs and solutions, applying the new dressing and label complete with written date and her name, she had to change the caps on the twin catheters. Invariably, one of these was so tightly screwed on that she could not get it to loosen. Janine and I would get so frustrated when we would have to go back to the MDA Infusion clinic to get one of their technicians to fix things. This happened several times. Once we got back to Jackson, we had to get the nurses at JOA to do it once or twice as well. They would always tell us to not get the new ones too tight when she put them on. Likewise, every day when Janine or other technicians would flush my lines they had to screw syringe like devises to the caps to do their duty. No matter how careful they were, the caps would tighten every day such that after a week these could be a nightmare to remove. Man she would get so angry when she could not loosen one and we would have to go to the clinics to do it. Never did Janine make the caps too tight. It was a poor design flaw that had two ends that twisted in the same direction. Thus when you attached anything to the one end it caused the whole cap to get tight. 

So as we pack and prepare for our move away from this Jackson home, this image will forever be one of lasting fun and misery. Thank heavens I no longer have to have that PICC line!

August 5, 2015 - Change of Venue

Last month's testing and examinations went well. My blood counts remained very good and my bone marrow aspiration continued to show excellent results with a "blast" count at 2%, well within the normal range of 0% to 4%. MD Anderson Cancer Center and it's exceptional team of Leukemia personnel continue to be my HEROES in health care. Thank you, thank you, thank you one and all.

We also rejoice with bitter sweet happiness and sadness because we have a signed contract for the sale of our house in Jackson, MS. We plan to close the sale by August 31 while continuing to pack and move out the week-end of August 28-30. Thirty years ago we purchased and moved into our property on Kings Place, a wonderful street and neighborhood. We have lived in Jackson a total of 40 consecutive years and now we will be leaving not only a house and city but our "home".

Our plan is to finalize our relocation to the Houston, TX area soon after the closing. Since we will be homeless for awhile until we find a house there, our move will be uncertain. We will continue moving our personal belongings into our Jackson rented storage facility near our house. From now until the 31st we will move it out with the help of family, friends and possibly a few hired hands. Several months ago we began serious purging, downsizing and give away efforts so the task at hand should go more smoothly. Our emotions will likely be the most difficult part for us to control realizing we will miss our good life here with long time friends and colleagues.

This move is all part of my health and healing process, however. As well as I have been doing these past few months we are not able to feel comfortable away from our medical team in Houston. The constant travel back and forth for testing and treatment has been increasingly hard. This MD Anderson experience will be a long term process and likely will continue indefinitely. We know it best to move and  we look forward to this new chapter and challenge in our lives. Like so many of us we have family scattered all over this great country. Our move to Houston will put us closer to Sarah, Ryan, Cason and Claire. For this we are very happy and excited. Sadly however, this moves us away from our beloved Mississippi and from James, Taylor and Modi in Hattiesburg. We will be even farther away from our granddaughter Helmi who lives in the Richmond VA area. Bitter Sweet, indeed.

One Year Anniversary July 8, 2015

Today marks the end of one year since we made our first visit to MD Anderson Cancer Center in Houston, TX., a remarkable institution. There is much about health care in America that is broken and in need of major change. Cancer research and treatment at MDA has been a shinning star for me, however.

A year ago I was sick and getting sicker. One of my many tests at MD Anderson on July 8, 2014 was a Bone Marrow Biopsy and Aspiration. The results not only confirmed my earlier diagnosis but showed my condition was getting worse than when first diagnosed. Without quick intervention my life expectancy was not too long. So intervention became the goal and work of my medical team. I was given two weeks off from treatment and we came home knowing we faced a very difficult time ahead. Upon return to Houston later in July 2014 my treatment would begin aggressively.  New more intense chemotherapy was started requiring hospitalization. The goal was to improve my condition and enable me to have a stem cell (bone marrow) transplant, the only cure for my condition.

We learned that finding a suitable match for stem cells was going to take time. After it was determined that my siblings were not a match, which would have been the best possible solution, we waited for the process to locate a perfect match. In the mean time, I did not respond well to the chemo treatments that weakened me such that even my doctors doubted I would be able to withstand the intensive level of chemo necessary to prepare me for a transplant once a donor was secured.

This is when the miracle happened. MD Anderson is blessed with outstanding people from just about every imaginable cancer fighting discipline. Within my team in the Leukemia department are doctors and other clinicians who are on the cutting edge of research in these conditions. Additionally, they participate with other institutions and physicians throughout the world doing research, trials and studies in hundreds of new drugs and therapies. My team matched my specific cell mutation (IDH2) with a new promising study that was enrolling new participants with my condition and cell mutation. Through careful screening and care they saw that I got quickly qualified for this study. The medication given me began working almost immediately. Within two months many of my blood count indicators began to vastly improve. Bone marrow test also showed greatly improved indicators as well. Within seven months my doctors declared me to be in complete remission and this good result continues until the present.

The pharmaceutical company, Agios involved in this drug known as AG-221 released its third results on the trial last month showing significant benefit to many of the participants being studied. Below is a link to this most interesting report.

http://www.businesswire.com/news/home/20150612005174/en/#.VZvvU0o8KrX

So as we mark the one year anniversary of my MD Anderson experience, our road to recovery and a more productive life is celebrated thanks to great science, good luck and miraculous intervention from many caregivers both seen and unseen.

June 27, 2015 - Still Doing Good

We are traveling back home from our monthly Houston trip on Saturday. My appointment with our team at MD Anderson went well without too much delay. Once again my blood counts were good with no issues that need attention and I am feeling good.

During the month between my two recent doctor visits in Houston I had two outpatient surgical procedures in Jackson. One was a new issue that had developed about six weeks ago when a small redness rash appeared on my left forearm near my wrist. After topical cream ointments didn't help a Dermatologist exam confirmed it was a Squamous cell carcinoma (Skin cancer).  So it was removed about 10 days ago leaving a rather long scar on my arm from the procedure and stitches. The pathology report after the procedure confirmed that they removed all of the cancer cells. Hope you love this gross post procedure photo! 

That same week I went under the knife again for an old issue that I was unable to deal with when my blood counts were so low last year. So far my recovery from this has been slow but good. It was in a very sensitive area that was affecting my bowel movements so I was pleased to get that behind me, pun intended. (Ha) I will spare you the picture of that one!

So as we travel the highways and byways of Texas and Louisana heading home again, we rejoice in continued remission and another month of good health so to speak.

Weekend Update June 19 - 21, 2015

Our weekend started with a bang on Friday.  Janine was honored by the MSU College of Architecture Arts and Design with a well attended party celebrating her retirement. She was a vital part of the success of the school for over 27 years. In addition to many colleagues, friends and faculty we were surprised to have both of our children and their families in attendance here at the Jackson 5th Year center.

After the festivities the family gathered at our house for the rest of the weekend. We quickly moved from celebration to work.  James, Sarah, Ryan, Taylor and Janine continued our efforts to purge and rearrange furniture to get our house ready for sale. They did an excellent job transforming several rooms into much better layouts with less clutter.

Sunday we celebrated Father's Day with gifts and cards, family church time together, a Keifer's meal and a few short moments of relaxation. Everyone headed back to their homes mid afternoon and Janine and I settled back for a time of rest from the fun but busy weekend.

AG-221 Medication Monthly Update

Yesterday I had my 28 day (every 4 week) evaluation and testing at MD Anderson. This one involved my blood tests early that morning, a bone marrow aspiration procedure, an echocardiogram with my doctor (medical team) visits.  For the most part it was a smooth morning with only about an overall one hour delay.  By 1:00pm we had checked out of the Rotary House hotel and traveled north to spend a long weekend with the Paul's.

While we do not have the results yet of all the above test, my blood counts continue to be good. Meeting with the medical team was most encouraging as they all continue to give us positive affirmations regarding how well I am doing. As for me, I continue to get stronger and feel better than I have in over a year.  I was approved to continue with the current course of medication using the experimental AG-221 medication. Friday I started my 9th cycle of the drug. Having very successfully completed 8 months I continue to be one of the best responding patients to this protocol.

Thanks Sarah, Ryan, Cason and Clare Paul for hosting us for the weekend. Also, thanks Dee Espey for traveling with us and entertaining us with your ways. Janine you are my life throughout all this adventure. Thanks for everything.